[george_rutkay]

My wife's medical team leader and I have been talking about issues related to caregiver burnout and feelings of isolation, profound sadness, loneliness.

I've been told that it would be highly recommended for me to seek other forms of human contact, companionship outside of my marriage just to remain grounded, balanced and healthy.

I have feelings of guilt related to thinking about and trying to follow this advice.

I'm at a point where I am afraid to change and afraid to stay as I am, filled with uncertainty. I love my wife very very much. I don't love her brain injury which has so cruelly stolen the essence of what makes her "her". I miss this very very much!!

And I have waited patiently in hopes that she will return to who she was before.

When I look at her, my feelings are filled with a mixture of love, sorrow, sympathy and a lot of pain. A great deal of pain. Her countenance very often is utterly frozen in some look of horror. Expressionless. Antiseptic. No trace of the warm, cheerful, beautiful lady I felt such a connection to. Or her mind fills with bitterness and rage, and her facial expression follows this.

The warm smile, the humour, the silent, unspoken connection we shared....where has this gone to? Why can't we feel connected or any emotions other than those which her injured grey matter feels?

I feel so torn and I struggle. I've expressed my feelings to my wife in a limited fashion to try to stir some emotion in her, to try to express what it is I am missing out of our relationship. I do not wish to burden or aggravate her, just communicate with her about what I need. Unfortunately this only increases her sense of bitterness and rage. Her level of comprehension in language and thought is still extremely fragile and superficial. There's little or no dimension to her understanding.

Once in a very very rare blue moon, when she is tired and her mind is close to exhaustion, she will tell me "I love you" and that is wonderful and beautiful!!

I feel though that I am not able to withstand very much more of life like this, with every day facing the same unmovable, silent bitterness which has enveloped her daily anguish. A part of me wonders at the cruelty of life, that someone should have to bear such burdens as she bears, and thus affect the lives of all who surround her.

The kids, now teenagers, have enormous difficulty with their mother. They are not able to understand her needs and they cannot bear to communicate to her to any depth because of her tremendous difficulty in basic language comprehension.

I am going to counseling, though the words of a counselor will do little to erase the aspects of my wife's injuries which plague our relationship. I would choose to avoid pills, etc.... for they are a mere substitute for what I truly need and miss - an evenly yoked, balanced and happy marriage and life partnership.

If I had any courage and if my wife were strong enough, I would consider begging her to understand my pain and my feelings and ask her to consider setting me free. But of course it is extremely uncomfortable for me to even consider this notion just on my own, let alone consider asking her to think of such a thing.

Thank you for letting me share.

[ginnie]

Welcome to Neuro Talk. You will find friends here for sure. alot of compassion exists in all these forums. Feel free to jump in any of the dicussions. There is also a posting for spiritual help. You are right, no pill can take the place of what you are missing with your wife. There is no job harder than being a caretaker for a very injured brain damaged person. I was an only child and cared for both my parents until their deaths. That burn out you speak of is a real delima. Sometimes there are caregivers support groups, maybe even meeting in your local library. I did this, and it helped me alot for the years I had with my folks. There may also be help with getting another person in, to give you a break with the caretaking of your wife.
Just from my own experiences with me, and others I know of, don't leave your wife, as she really does need you. You need to find some other things in life to help fullfull you, to give your own life more meaning, inbetween the responsibilies you have. Nobody can do this care, all by themselves, it is just too hard. I had help in with my folks, and my son gave 100% effort to help me with mom. I will be here to talk to, and so will the folks on NT. I know what you are going through, being witness to a person who is not themselves is tereribly difficult. We are a spirit, living in a body. Your wifes spirit has been compromised. She is still there under all. I hope sincerely, that she can improve. Please take care of "you" and find some outlet/help so that you have some enjoyment out of life. Yes, your own mental well being needs to be taken care of as much as your wifes. You will be in my thoughts and prayers. ginnie

[george_rutkay]

The thought of leaving my wife is painful to me, so I don't believe it is possible.

A lot of the things which used to give me happiness seem to pale and be unimportant in life, they've lost their treasured place by comparison.

At the same frustrating time, when I need to turn to my wife, she isn't the same person in a thousand various ways.

I am following the health team leader's advice and am seeking some innocent measure of companionship and friendship, not with any intention to replace my wife but just to find a way to fill the emptiness.

Thank you.
geo

[ginnie]

I think that is a great idea. You must have some kind of support, companion friends to make your life better.
I will be here anytime to yak to. ginnie

[Canadian Sig]

When I came home from overseas wounded I was an entirely different man. My wife has had a very rough 18 months holding my (often "unresponsive" ) hand through it all. I had/have sever PTSD, TBI and PCS. For a very long time I couldn't carry on a conversation past 2 sentences without "dissapearing". I know that the man she got back was not (and never will be) the one she sent off to war (for the 4th time). It tokk me a long time to come back to the point I am at now and I know what a struggle it was for her, and in some ways still is (she deals with my waking up screaming and my constant pain). Now that I am in a state where I can recognise that I ensure she always knows how much I appreciate all that she has been through in the last few years. They who tend the wounded are also wounded themselves.....Be patient George. She may not be done healing and "coming home" yet.

I am also always here to chat if you need a shoulder.

[Neurochic]

George

Your situation is very difficult and it must be a real struggle every day.

You didn't say what your wife's prognosis is - is she expected to get any better or is her current situation likely to remain unchanged in the future? I guess I'm asking because that could have a huge bearing on how you cope going forward.

I think the advice to make other friendships and relationships outside of your marriage is critically important. Even for couples who have no illness issues to cope with, it's just not healthy to have no outside friendships. It's extremely important to have other friendships, male and female, and to have interests or hobbies that you are able to pursue without your wife. You shouldn't feel disloyal - it's totally normal to do this. It's well established that women live longer happier lives than men because of the extensive social networks that they tend to have. People need contact and interaction with a range of other people for fulfilment and happiness.

Nobody is suggesting that other friendships are a substitute for your wife, they are something that will enrich your life in addition to your marriage. However, in your case, because of the massive personality changes and communication difficulties your wife has, it is even more important that you make friendships and interact with others regularly to try and avoid isolation and depression overwhelming you. That will ultimately only make it much harder for you to be there for your wife.

Its fantastic that you are seeing a counsellor or therapist. I'm not suggesting there's anything wrong with you! It's just that when one person in a relationship has a life-changing illness or accident, that massively changes life for the people close to them too. She is dealing with the changes that affect her directly which takes up her time and energy, I don't know how badly hurt she was but its possible she is not fully aware of her behaviour and the ways in which she has changed. You, however, have nothing wrong with you, you are the same person and other than having to deal with what has happened to your wife, you are just the same physically. This means you are left in the frustrating position of having your life horizons narrowed by someone else's ill health. That is frustrating and difficult to come to terms with.

You can't underestimate the psychological issues that can stem from being left as the un-damaged party in such a close relationship, especially where the other party has undergone profound personality and communication changes. Seeing a counsellor or therapist gives you the time and space to work through your own feelings without anyone judging you. It allows you to be honest about all of the uncharitable and resentful feelings you will have towards your wife and what has happened to her - things you feel guilty for feeling, let alone saying. You will have to grieve for the losses you have suffered - the loss of your wife as you knew her, the loss of your previous lifestyle, loss of your best friend and so on. You may feel angry or resentful - all of that is totally normal but it doesn't feel comfortable. It's difficult to work through all of these things with friends or family because inevitably they make judgements or have their own losses or opinions.

I understand your choice not to take any medication although that may not be right for everyone in a similar situation. It's easy to discount medication on the basis that it means you aren't actually doing the coping by yourself or it will just cloud reality and not solve anything. However, it doesn't work like that it helps give you support and a bit of a break as you work through the changes and emotions. There are no prizes for going through misery without help!

Perhaps your children would benefit from counselling too, they sound as though they have their own issues coping with what has happened to their mother. They may find it harder to accept since they are at a time in their lives when they are going through huge emotional and physical changes too. They will lack the maturity and life experience to cope in the same way as you can. They have also lost a person who is supposed to be caring for them which is bound to be difficult. Teenagers aren't usually the most patient so its bound cause tension when her communication is slow and limited.

I have no idea if your wife is getting ongoing help for the physical and emotional damage or whether this has largely stopped. Is there any further treatment or therapy that can be suggested to help her come to terms with the frustrations, limitations and anger she must be feeling? It is probably worth continuing to try and talk to her about your feelings although you may want to this discuss with her doctors. They may be able to guide you a little more as to why she is reacting as she does, whether she is cognitively affected and thus simply going to be unable to process logic, emotions, expressions and so on. Perhaps they can suggest techniques for communicating through these discussions with her to minimise angry, explosive or negative reactions from her.

Ultimately, as time passes and you work through your own feelings, you will come to either make your marriage work again or perhaps you will eventually feel that you are not able to continue with it. I don't think you are at a place where you yet know what will happen either with your wife's recovery or your own ability to come to terms with her injuries. All you can do is keep trying, keep working through as much as you possibly can with her, your children, your counsellor, friends and so on. If in the future, you feel unable to stay with your wife, then you will know that you have done your very best - nobody can ever ask more than that of you. You may have to come to terms with the fact that you will never have the even, balanced and happy relationship you once had and your wife may never be the same person you once knew. It sounds like its probably too soon to know any of this yet though.

I hope that has been of some use.